My Experience with Wet Macular Degeneration

by Dorothy
(Boise, ID, USA)

I had a sudden orange patch in my right eye in September 2010. I waited over a week before I called my husband's eye doctor.


After examining me, and saying he thought it was wet macular degeneration, he sent me to a Retina specialist just down the street, that very day.

The specialist confirmed the eye doctor's diagnosis, and started the treatment right away. Examinations, photos, and a shot in my right eye.

I have had seven treatments including the shots, and the last one without the shot. I have had very little discomfort.

My vision early improved to 20/50, and has stayed that way. I have no problems seeing in daylight, but dim light and night is a slight problem. I read just as much as I ever did.

I have a slight dry macular degeneration in my left eye, which we are watching.

I am very pleased with the specialist and his office staff, assistants, and nurses. They are very caring and friendly.

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Wet Macular Degeneration - OK for Now

by Bill
(Wiesbaden, Germany)

About 11 years ago the drusen were spotted with dire predictions. Two doctors later, I pressed for an estimate and one doctor said "two or three years."

I started taking ICaps vitamins and tried to put more greens in my diet.

Five years later horizontal lines on the computer were wavy, slightly, for the left eye only.

At the Frankfurt University hospital I was told they saw nothing but scar tissue.

Another four years and the waviness developed into grey spots. The diagnosis was not macular degeneration but some sort of retinal problem, at the same hospital.

Doubting the validity of this I went to Johns Hopkins and they immediately diagnosed it as wet macular degeneration and recommended Avastin injections for the left eye.

The first injection in San Francisco was pretty horrible. Maybe it was the shock, but the anesthetic was not done in steps. It felt like a big jolt of electricity.

Later, in Germany, at a new clinic, I received two more, but they were painless. Sitting in the waiting room, I received the numbing drops in stages and felt nothing when they performed the injection.

The night before the 4th injection, the grey spot started looking red around the edges. It was a hemorrhage. The grey area grew and got darker. One more injection was performed, but nothing since. We are waiting and watching. They claimed my condition has "stabilized." Whether the injections did any good I have no idea.

At Johns Hopkins I was told that I had a 95 percent chance of preserving my vision, and that if one eye gets AMD there was a 25 percent chanced of it going to the next eye.

At the moment my left eye has 25 percent visual acuity. The right has 100 percent (corrected).

There seems to be a disagreement whether there are drusen in the right eye or not. The brain actually compensates for the bad left eye, so it is almost normal.

At this point I am used to the fact that the left eye is useless for any specific vision task. I couldn't possibly read with it alone, or watch films or TV and definitely could not drive.

With peripheral vision that remains at least I could know were I am and navigate around familiar places, maybe even walk around downtown.

However, right now, I can drive, read, write, and navigate well. Sometimes, a few feet in front of me, I misjudge such things as pouring wine. But not if I am careful. It's a little shaky driving at night, especially in the rain. It just means I have to concentrate and be careful.

The big change would be if my right eye went bad.

On the whole, as I am 74, I feel the pressure of time to get things done, especially writing. I'm writing a kind of novel/memoir, and I feel some pressure of time.

A few other medical issues are also at hand. Suddenly it seems more realistic to take mortality into account.

But, since I have stopped feeling sorry for myself, daily life seems a lot more interesting than to pay attention to my difficulties, which, really now, are fairly minor.

And, even if they get worse, I have my other senses. People who are totally blind function in life very well.

I would say, you can live with this reasonably well. Adjustments are possible and life can be good.

BK





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Oct 29, 2013
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Diagnosis and Treatment
by: Monica Trinder

In 2009 as a teacher, I noticed that the lines on the register that I was marking, were wavy and slightly distorted one morning. I had had an accident teaching Physical Education a few years earlier which resulted in the loss of central vision in my left eye.

As a result of this I was very vigilant about any deterioration in my vision. I contacted my optician who examined both eyes and immediately sent me to my GP with a letter asking her to contact the local eye hospital. At that time I did not have a clue as to what was wrong as the optician was very discreet and did not want to alarm me until the experts had seen me.

Within a day I had been seen by a specialist and after a few more days was told that macuar degeneration was confirmed in my right eye.I was truly devastated but had never heard of the condition until that day.

I was 'young' to have developed it at the age of 56 apparently. All I could think of was that I was going to have a needle stuck in my eye. Lucentis treatment has now been on-going every month or so since diagnosis. I am still able to drive and did carry on working for some time, but sadly did retire early from teaching as all the close work and marking was just too hard.

Otherwise I lead a full and active life and can only sing the praises of the staff at the Royal United Hospital in Bath at the Eye Unit for their care and consideration. I take 'Icaps' every day and try to eat as many green vegetables as possible. During the Autumn and Winter in the dim and darker evenings I do find it hard especially outside but I always carry an LED torch with me and only drive on familiar routes taking great care. I purchased a large print keyboard and larger screen for the computer which others have said also help them although they do not suffer with the condition!

The RNIB were very helpful with lighting for the inside of cupboards and reading lamps around the house. Sometimes I do forget that I have this condition when it is bright and sunny as sunglasses really help with glare, but I do find it frustrating at times. Thankfully the condition has been stabilised and I take it as a bonus if I do not have to have an injection now and again.

The injections are a necessary evil and save my sight however unpleasant they are....but I will never get used to having them. I am just so thankful that the treatment is available on the NHS here in the UK as I would never have been able to afford to pay to save my sight. I dread to think how things would be if this was not the case.

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Wet Macular Degeneration.: A Big Wake Up Call

by Robbie Schaecken
(SYDNEY NSW Australia)


"I'm just trying to stop you from going blind" said my doctor as I baulked yet again at telling him just how out of control my Blood Sugars had become, as he organised a blood test.

I had been a Type 2 diabetic on insulin for 10 years then, and truly lost the plot with the routine I needed to follow, in order to stave off the complications that were inevitable, for as long as I possibly could.

That was 15 years ago now. So that makes it 25 years all up. I went to see the doctor with a small blank spot in one eye, and after the gamut of eye tests that they put you through, I was told that I had spots that needed zapping with a laser and that I would need some Avastin injections for Wet Macular Degeneration.

I was shell-shocked. How could this be happening to me? I had the laser first – not too bad. Then, the days clicked over to my first eye injection. Oh Man, I wanted to be anywhere but sitting there waiting to have an eye needle. I felt sick in the stomach; I wanted to throw up, run away. My heart was beating so fast and hard I could hear it in my head, and see it moving my chest.

Lots of anaesthetic drops later, and without even seeing the needle “a bit of pressure “ was what the doctor said and some “bubbles in the eye” IT was done. I felt like flying. All over? “Yes “ he said, “that’s it”. What a relief, now lets see if I can see well. “ This will take a while” he said “and a few more injections” I fell over at the thought of more injections and walked dejected from his clinic after a detailed explanation With another appointment in hand.

After a couple of days, I had a good talk to my self and decided that if that’s what it takes to save my sight, well that’s what I’ll do. So here I am on my 11th injection over a couple of years with a bit of ME time off as I was tired of the routine. The doctor is working very hard to save enough of my sight so as I can keep my drivers license.

I have a sense of humour about life now that I never recognized before. Maybe because I’m 66 years old, and my best friend and I have had many a good old belly laugh about my poor eyesight. She, having saved me a few times from falling down a gutter or two, saying " next time mix more water with it" as we head off LOL.

We were driving along a well known road she was the driver, as I wasn’t seeing well that day. I mentioned that I couldn’t see the sign hanging from the over hanging traffic light post, I said “ you know mate my eyes must be getting really bad because I cant see any of the writing on that sign” “oh” she said as we got closer “that’s because there’s nothing on it, it’s facing the other way” . We've dined out on that one.

Macular degeneration is no fun. Thankfully there are web sites like this one and so many great products, organizations, and people available to help us.

When I do lose my license and can’t drive anymore, and my eyesight is very poor. I’m not worried how I’ll cope.
I am concerned how the people I interact with will deal with my warped sense of humour about it.

Keep smiling people ( It makes the world wonder what you’ve been up to)

Ms. Robbie Schaecken

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Oct 27, 2011
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Cellophane Maculopathy
by: mags

I just wish I could be like you. I have dry AMD and hVE been told I need Cellophane Maculopathy. Has anyone else had this treatment, as I am really scared that it doesn't work.

I have dry AMD in my right eye, had it for roughly 7-8 years. Although I can't read with this eye, my vision with the left one compensates for it. My doctor has said that I am starting with dry AMD in the left eye now. So anyone, I would appreciate any info.
Nice to meet you all.

REPLY

Hello Reader,

Cellophane maculopathy is the name of a retinal disorder. It refers to an eye condition when a membrane grows on the surface of the retina. Call your doctor to get clarification on the name of your retinal problem and the treatment recommendations.

Kind Regards,

Leslie Degner, RN, BSN

Oct 23, 2011
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Robbie
by: Roy & Marj

We have known Robbie for a number of years, we communicate by email most days. She is a very loving and loyal lady, and a friend for life.

Once she makes her mind up to do something it is done 110%. She will handle anything which comes her way, even though she may not like it, and macular degeneration will be no different.

As a fellow diabetic, I know how easy it is to stray from the strict rules you must follow to stay healthy. Look at the things which can go wrong if you don't stay on the path.
Best wishes Robbie and keep smiling.

Oct 22, 2011
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Your Wake Up Call
by: Anonymous

I definitely like your sense of humor. I've been teasing and saying I guess I'll have to get piano music printed in braille to play the piano at church.

Someone said just memorize the songs while I can see. Memorize the songs? Are you kidding, if the scheduled songs were printed on the bulletin I would forget what I practiced on Wednesday to play on Sunday :O)

I'm 65 and doing good to remember my name much less how to play song on the piano.

We have to laugh at this because if we don't we will get so depressed we wouldn't make it. I'm determined this won't get me.

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Wet Macular Degeneration Treatment and Me

by Arun
(Toronto)


I first had wet macular degeneration in my left eye six years ago and was treated with Visudyne and laser.

Unfortunately, the treatment did not save the central vision. Now my right eye is also affected and I have received Lucentis injections. They have helped me a lot. I keep my fingers crossed and maintain a positive outlook.

REPLY

Thanks Arun, for sharing with us your experiences with the different wet macular degeneration treatments. It is good to hear that the Lucentis injections are helping.

Six years ago Lucentis was not available. It was FDA approved in 2006. This anti-VEGF drug works by blocking VEGF. VEGF stands for vascular endothelial growth factor, a hormone that stimulates the growth of fragile and leaky blood vessels.

Wet macular degeneration is the result of the formation of new, fragile and leaky blood vessels growing under the retina. The growth of these new blood vessels is called angiogenesis.
VEGF is secreted by cells that are oxygen deprived and stimulate the growth of these abnormal blood vessels.

Lucentis works by blocking the growth of these tiny blood vessels that leak blood and fluid which then damages the photoreceptor cells in the retina.

Leslie Degner, RN, BSN

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Nov 20, 2016
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Whole Foods Plant based diets can help
by: Anonymous

To Add to my comments of July 2015, I continue to eat the whole foods plant based diet with no oil, and no animal products of any kind. I have not had an injection for over three years now and my vision is stable. I do believe that dairy leads to the growth of VEG-F (or neovascularization) in the eye.

Jul 07, 2015
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VEGF and my experience
by: Arun

I have now gone on a whole foods plant based diet and eat a lot of greens. I have learned that dairy leads to angiogenesis and I don't need new blood vessels growing in my eye!

I feel that eating greens every day and dropping meat and dairy from my diet has improved my vision. I have not needed an injection over two years now (touch wood).

May 23, 2012
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VEGF Hormone
by: Anonymous

Dear Leslie:

If VEGF occurs because the cells in the retina are oxygen deprived, I wonder how we can increase their oxygen supply?

Reply

You might want to read by what Dr. Edward Kondrot, board certified ophthalmologist says about microcurrent stimulation here:

http://www.webrn-maculardegeneration.com/microcurrent-stimulation-for-macular-degeneration-11.html

Leslie

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My Journey with Wet Macular Degeneration

by Anita
(London, England, UK)

I am a female aged 78 was teaching adults how to use computers till end of March 2011.

I was first diagnosed with wet macular degeneration in March 2011

I could see wavy instead of straight lines of text and objects - I also had blurring of text and objects too, which made working on computers a little hard to do ... I could see blue surrounding objects when I looked through that eye on its own.

I also felt that the eye was not really working, Fortunately the other eye is good so therefore I was still able to see.

I was started on Lucentis injections in April 2011 - and I am one of the fortunate ones.

After the 1st injection within a few days I could see text without it being wavy or blurred. The leaking veins had been sealed.

I have had 5 injections altogether and all the fluid has now gone after the last injection that I had in September.

I still cannot see any fluid and am due to return to hospital in November for a check up.

At present I am having good vision in the eye, and was told there was damage at the back of it, but it is hardly noticeable.

I do sometimes see lines on the right of pictures slightly wavy but am used to it now so it does not bother me.

The main thing is that I am still able to use my computer. It was a struggle whilst the eye was not so good - but now it is almost back to normal and I still cannot believe my good luck........ I am now hoping it lasts for the rest of my life - but who knows !

I do read your emails and the links thereon - thank you, they are very informative.

I do hope that everyone will eventually benefit from the treatment that is at hand and are lucky to have the same results that I have had.

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My Journey of Indecision with Wet Macular Degeneration

While this could be considered my story with macular degeneration, it truly is more about the inconsistency in the medical profession, as well as their aggressiveness.

For the past 12 years I have been going to a very well known eye clinic in Miami, primarily for a lesion behind my right eye. As time went on, the young and very highly respected doctor decided that I was coming down with wet macular degeneration.

He ultimately decided that I needed an
Avstin injection, never telling me that I would be unable to see out of that eye for at least several hours.

I then found myself driving home for 150 miles with one eye through a bad rain storm. I was not happy.

The irony was, that when I went to see my local ophthalmologist, he admitted that I had some leakage issues, but none that needed any drastic measures.

I went back and forth between these two doctors for several years. The Miami doctor ultimately injected both eyes, and then about 18 months ago, after being checked for 20/20 vision in both eyes, he again said that he was going to inject both eyes because of wet AMD.

I calmly said: "I don't think so". I have never witnessed a doctor get so upset. He carried on like a baby that had just lost their favorite toy. He was quick to tell me that I was going to go blind if I did not follow his advice and to never return again for his diagnosis of anything. I calmly walked out.

I then put myself on a regiment of vision nutrients and returned to my local doctor every 3 months for over a year. Being quite satisfied with his test results, I now see him every 6 months. He always keeps saying: 'Whatever your doing, don't stop'.

I'm submitting this story for the benefit of all your readers. If at all possible, always get another opinion, especially from someone that has been practicing a very long time.

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May 01, 2015
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Alternative treatment?
by: Nancy

I am 59 year old who wears reading glasses for past 10 years. My ophthalmologist recently sent me to a retinal specialist to check on a freckle in my left eye. This doctor has monitored the freckle for the past year with no change. However, he now says I have to take lucentis injections in my right eye because he sees a leaking blood vessel and if I don't take these shots I can go blind? Isn't there some alternative? Thank you.

Apr 30, 2015
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Very Aggressive with Lucentis
by: Anonymous

I had been seeing retinal specialist for follow up re a freckle in my eye, after a 3rd visit (one every 3 months) - he mentions the freckle looks OK, but then all of the sudden he is concerned with my other eye and orders another test.

That same day , he then says I have wet macular degeneration (even though nothing was ever mentioned about AMD during the prior visits), and that I needed to take Lucentis shot right away or I can go blind.

Needless to say, I was stressed. He said that I would need a shot at least every month and watch what happens, and that I would need these for the rest of my life.

My vision is fine -and I was never asked to look at the grid - until after I said that I cannot have a shot because I need to think about this and find out more information about these shots.

Anyhow, I think there is just too much Pushing for this and the Urgency of it is very scary

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